Our daughter Hailey was diagnosed with Leukodystrophy in 2011, a terminal brain disease. There is no cure or treatment. In January of 2015 she had a Pacemaker placed. There are medical bills, prescriptions not covered by insurance, Dr. Appointments out of state, and surprise expenses that would take a toll on any family. One way to share our story is to share jewelry we created together. There are many places we want to take her.
Each necklace signifies a Hug for Hailey.

Friday, September 5, 2014

First day of school - 1st Grade

Hailey is officailly a 1st grader! She was so excited to go back to school and better yet to ride the bus to and from home.

This year Hailey will have adaptive PE along with Music, Art, Physical, Speech, and occupational therapy. I can't forget Hailey's new favorite Library. She will also be taken out of her self contained special needs classroom and placed in general ed for reading comprehension. I know it may be difficult for her but I know she can do it and how ever it turns out, if she excels or not I'll be proud of her for trying.

Nothing about working with the school district has been easy for me. I had fought for so long to finally get Hailey what she needs and what she is entitled to. This year she will have her same 1 on 1 aide to help with all her needs. They even have a walker in the class so that Hailey can move from class to specials and back and not depend on her wheelchair. Her wheelchair is there as a backup. She can get tired so easily. She comes home and I ask her a bunch of questions about school. I have her aide write down some details so that I can encourage Hailey to tell me about her day.

At night after therapy and appointments her and I do homework together. She does fight me, but we work together and make a good team. I'm excited to see what she will learn and all the friends she will make.
Have fun my big 1st grader!!